What does it mean to be a part of the vitiligo community? This past weekend, it meant 300 patients, advocates, dermatologists and families gathering in Houston, Texas for the 2019 U.S. World Vitiligo Day conference. The three-day event took place at the Marriott in Sugar Land, on the outskirts of Houston. Here are just a few of the highlights.
#1 More than 300 people gathered on the steps of Sugar Land’s City Hall
Perhaps nothing captured the energy and pride of the vitiligo community than the group picture on the steps of Sugar Land’s City Hall. On a bright, sunny and humid morning, more than 300 people gathered on the steps to take a group picture captured by photographer Rick Guidotti. The moment wasn’t complete without doing ‘the wave’ – accompanied by cheers and laughter.
#2 Dermatologists gave hope for the future of vitiligo and its treatment
With new research being done on vitiligo and three clinical trials underway, the future of vitiligo is bright. “I’ve been in practice for 28 years,” said Dr. Amit Pandya, dermatologist at the University of Texas Southwestern Medical Center. “For many years, trying to convince a company or someone to do research [for vitiligo] was like talking to a brick wall. But in the last five years, I’ve gotten so many companies coming to talk to me about research. I can’t think of a more exciting time in my life as a doctor and someone passionate about vitiligo.” But while new and better treatments are around the corner, doctors have their sights set on an ultimate goal too. “A cure is something that you take once and that’s it,” said Dr. John Harris, dermatologist and director of the University of Massachusetts Vitiligo Clinic and Research Center. “That’s our constant goal and I think we’ll get there.”
#3 Patients shared their personal stories of pain and courage
Throughout the weekend, those with vitiligo spoke about their personal experiences with vitiligo – both as part of the event and through intimate personal conversations. For some, the vitiligo journey is just starting – in fact, one 89-year-old woman was diagnosed within the past year. For others, they can’t remember a time when they didn’t have vitiligo. And for many, being at the World Vitiligo Day conference was the first time they had been a part of any sort of community for vitiligo. Patients talked about the struggle of living with vitiligo and the courage that they’ve found to embrace their skin.
#4 Everyone got a big Texas welcome – and danced the night away
The event kicked off Friday night with a big Texas welcome – boots and music included. The following evening, the celebration continued with a dance party that lasted well into the evening as doctors, patients and families hit the dance floor. Even the kids had fun on the dance floor before heading off to their own pajama party.
#5 Doctors shared the three pillars of vitiligo therapy
During a medical update, Dr. Pandya shared three pillars of vitiligo therapy that are required for optimal success in treating vitiligo: reducing triggers, reducing the attack of the immune system and increasing melanocytes and melanin production. To reduce triggers, dermatologists recommend getting antioxidants by consuming five servings of fruits and vegetables a day and eating a handful of almonds. Patients should also avoid trauma on the skin, which can be as simple as wearing shin guards if you play soccer or wearing gloves if you work with your hands. Dermatologists are using corticosteroids, tacrolimus, pimecrolimus, and JAK inhibitors to reduce the attack of the immune system on the skin. And lastly, phototherapy, skin grafts, cellular grafts and afamelanotide are used to produce melanin.
#6 Parents got advice on how to build the emotional well-being of children with vitiligo
Dr. Alanna Bree, board-certified pediatric dermatologist, shared advice for parents of children with vitiligo. First and foremost, says Dr. Bree, you must accept your child’s vitiligo before anyone else can. Your opinion of your child will set the bar of how others will see and treat them. Second, empower your child with understanding and knowledge and be open to answering any questions that they have. It’s important to be open to talking about vitiligo with your child as avoiding healthy dialogue can lead to shame and withdrawal. In other words, hiding vitiligo only makes it harder to address it. Third, be a positive example as your children watch what you do and listen to what you say about their skin and your own body and beauty.
#7 Patients got to ask leading vitiligo experts questions about their personal journeys
One person had an unusual sun sensitivity. Another person’s family is having a hard time accepting her child’s vitiligo. And yet another wanted to know about the role of genetics in determining someone’s chance of getting vitiligo. Between sessions, several leading dermatologists and psychologists fielded these and many more questions from patients. On Sunday, patients had the chance to sit down with doctors in a group setting to ask questions.
#8 A panel discussed the importance of how we talk about vitiligo
Condition, disease or disorder? The words we use to describe vitiligo has become a hot topic in the vitiligo community this year. During a two-hour community panel, patients discussed their personal perspectives on how they refer to vitiligo and why. For some, the word “disease” carries a stigma that can take an emotional toll and cause negative reactions. Terms like “condition” can be easier to accept mentally and emotionally. For others, it’s important to focus on vitiligo as a disease to raise awareness of the need for treatment and insurance coverage.
#9 Speakers recognized the journey of vitiligo – and that each person’s journey is unique
Why do people come to the World Vitiligo Day conference? Some come to celebrate their skin. Some come to find others who look like them. And some come to find out how to treat their skin. All of those are okay – and speakers were sure to reinforce this. Everyone is at a different point in their journey with vitiligo and the material presented throughout the conference spoke to every part of it.
#10 The 2020 U.S. World Vitiligo Day celebration was announced
Save the date! The fifth annual U.S. celebration of World Vitiligo Day will take place in Minnesota June 26-28, 2020. Hosted by the Global Vitiligo Foundation and Minnesota VITFriends, a vitiligo support group, the conference will be held at the Minneapolis Airport Marriott. More information will be available on the event website at www.wvd2020.com.
Did you attend the 2019 WVD event? What was your favorite part?
Erika Page is a writer and blogger with universal vitiligo. Based just south of Washington, D.C., Erika founded Living Dappled to create a community of inspiration and hope for girls and women living with vitiligo.